How Acurate Are Blood Tests?

[Agent Z]

Hey, I'm new here and am finding this to be a great resource for helping me with this Celiac problem. I was just diagnosed with this last week, and while it would explain certain things that have been happening to me in the past few years, sometimes I wonder in the back of my head if the blood test I got that my doctor says confirms I have Celiac disease is accurate, or if I should do other tests. I got an endoscopy too a few days later, and they said there was irritation in there (even some food somehow undigested), but I still wonder. At first, I was in complete denial about the thing, and even though I'm starting to cope with it and accept it, I still kinda wonder in the back of my mind.

[Mango04]

If you have any symptoms of celiac disease, and your blood tests came back negative, we would still be telling you that you could possibly have it. The best thing to do is remain strictly gluten-free and see how much better you start to feel

[mouse]

My understanding is that you can have a false negative, but NOT a false positive. So, yes, you have Celiac. Welcome to the board and you will find so much info here that will make it easier for you to navigate thru this disease and how to buy food, etc. I learned online with about 300 hours of looking everything up. I joined the board late last summer and I have learned more here, then I did with all of my personal research.

[tarnalberry]

False positives don't really happen. The body doesn't produce antibodies to something that it is happy with. :-)

[mart]

Agent Z, welcome to the board. Everyone's right. Celiac is like pregnancy - you don't ever get a false positive by way of blood test. Anyway, please accept your diagnosis, for your health's sake, stick to a strict gluten-free diet and stick around this forum for great advice. You may be overwhelmed at first, but you'll find a lot of great information/resources thanks to the experts on this site. Good luck to you. It does get better!

[Agent Z]

Is it true that some Celiacs have to be more strict than others? I've heard that some can't eat food that has touched wheat (which my doctor doesn't think I'm that intolerant). I hope I'm not that intolerant, and from what I find, I don't think I even am. It seems random when the effects of Celiac disease kick in, though I admit, they happen. But for instance, I am at college for the summer now, and there isn't much to eat now. I was at the only dining center and didn't have much food at the dorm to eat, plus I was out and didn't want to be a drag. So I went to McDonald's with someone and ended up eatin Chicken Nuggets, fries and an Oreo McFlurrey. Nothing really happened after. So perhaps, once in a great while? I don't plan to eat anything with gluten for the rest of the week because of that, but I find it difficult to COMPLETELy avoid it.

[Daxin]

Agent Z,

My doctor told me my blood test showed a gluten intolerance (TRIPLE the level antibodies). Call it what you will, if the blood work came back positive like mine did, then you are a celiac.

BTW, My doctor now informs me that these blood tests are almost as acurate as the endoscope.

Hope that helps to put your mind at ease some.

[taz sharratt]

Is it true that some Celiacs have to be more strict than others? I've heard that some can't eat food that has touched wheat (which my doctor doesn't think I'm that intolerant). I hope I'm not that intolerant, and from what I find, I don't think I even am. It seems random when the effects of Celiac disease kick in, though I admit, they happen. But for instance, I am at college for the summer now, and there isn't much to eat now. I was at the only dining center and didn't have much food at the dorm to eat, plus I was out and didn't want to be a drag. So I went to McDonald's with someone and ended up eatin Chicken Nuggets, fries and an Oreo McFlurrey. Nothing really happened after. So perhaps, once in a great while? I don't plan to eat anything with gluten for the rest of the week because of that, but I find it difficult to COMPLETELy avoid it.

you really need to be carefull you may not get a reaction straight away it could take a day or so for it to work its way through, just because you cant see a reaction doesnt mean that its not damaging you internally, you dont realize that your not absorbing nutrients, sorry to wag my finger at you but im a mum and i cant help it, why dont you give the diet a try and if it doesn work you gor 2 things you can do, the first is come off the diet and eat normally and the secind is come back on the site and go " na na na na na na " and told you so and wg your finger at me, SORRY!

[tarnalberry]

So I went to McDonald's with someone and ended up eatin Chicken Nuggets, fries and an Oreo McFlurrey. Nothing really happened after. So perhaps, once in a great while? I don't plan to eat anything with gluten for the rest of the week because of that, but I find it difficult to COMPLETELy avoid it.

You MUST completely avoid ALL gluten if you are celiac. Period. It's a chemical reaction in your intestine - the gluten protein reacts with chemicals already in your intestines to form antibodies that - after a series of further reactions - damage your intestines. You can't have food that's been on bread, you can't have little bits of breading, you can't have a crouton here or there, you can't have gravy with just a bit of flour. This is a lot like an anaphylactic allergy - strict avoidance - only it can kill you very slowly instead of very quickly.

[Agent Z]

See, I wonder though, how long do you think I'd live to if I was never diagnosed with this (I'm 19 currently)? I ate glutten on a regluar basis till only a week ago, and let's face it: America is Glutten-Central. Other countries use rice and stuff, but we choose wheat. We could very easily use rice, but because we're so used to wheat, and because of the extra cost for places like McDonald's to make a non-wheat bun, it'll likely never happen until enough demand comes. And that isn't likely since this is rare.

I know I have to keep to the diet, and unlike other diets, I actually can hurt myself if I don't do it (whereas a normal diet you can quit without fear of hurting yourself, unless you just keep gaining weight). But right now, it's INSANELY hard. I Just went to the student center, and I can have virtually nothing. I could have a handful of items, but it's not worth wasting my credit on. So I'm trying to figure out where and what the hours are of a local thai restuarant are (my parents went there and brought me back some AMAZING pod thai that was all rice based).

[penguin]

let's face it: America is Glutten-Central. Other countries use rice and stuff, but we choose wheat. We could very easily use rice, but because we're so used to wheat, and because of the extra cost for places like McDonald's to make a non-wheat bun, it'll likely never happen until enough demand comes. And that isn't likely since this is rare.

The thing is that wheat is pretty essential to tasty bread BECAUSE of gluten. Gluten is like elastic, and it makes breads stretchy. The problem with rice bread and such things is that it lacks that elasticity, so we have to add a bunch of crap like gelatin and xanthan gum to try and hold the ungluteny grains together. That's why most gluten free breads and crackers fall into either the cardboard or styrofoam categories.

As far as McDonalds and gluten-free buns, I've heard rumors that in Finland (or some other scandinavian country) has gluten-free big macs

Oh, and Celiac isn't rare. It occurs in as many as 1 in 133 people.

[Agent Z]

Let me tell you, the thing I am DYING for is a burger. If it wasn't for the BUNS I could have one. But it's just no fun to eat one without a bun.

At least I can still have meat. I went to Applebees awhile ago and got a take two of Prime Sirloin and their Ribs. Delicious!

[tarnalberry]

See, I wonder though, how long do you think I'd live to if I was never diagnosed with this (I'm 19 currently)? I ate glutten on a regluar basis till only a week ago, and let's face it: America is Glutten-Central. Other countries use rice and stuff, but we choose wheat. We could very easily use rice, but because we're so used to wheat, and because of the extra cost for places like McDonald's to make a non-wheat bun, it'll likely never happen until enough demand comes. And that isn't likely since this is rare.

I know I have to keep to the diet, and unlike other diets, I actually can hurt myself if I don't do it (whereas a normal diet you can quit without fear of hurting yourself, unless you just keep gaining weight). But right now, it's INSANELY hard. I Just went to the student center, and I can have virtually nothing. I could have a handful of items, but it's not worth wasting my credit on. So I'm trying to figure out where and what the hours are of a local thai restuarant are (my parents went there and brought me back some AMAZING pod thai that was all rice based).

The average statistic quoted is that undiagnosed celiac disease takes 10 years off your life. I haven't seen any statistic for how miserable, on average, it makes the other years, though.

The thing is, you're going to have to get creative. Talk to campus services about dealing with you appropriately (they do have to, by law), look into getting off the food plan, look into learning to cook in the microwave, look into getting a couple of cooking appliances (rice cooker, electric skillet, electric grill, toaster oven), learn to make things that don't need to be cooked. You will have to be creative and resourceful to get around this particular portion of your life where others are holding a lot of control over your food - or you will have to take that control back for your self.

(BTW, Thai is usually a safe bet, but ALWAYS ask them about the sauce. Do NOT assume that it's gluten-free.)

[penguin]

Let me tell you, the thing I am DYING for is a burger. If it wasn't for the BUNS I could have one. But it's just no fun to eat one without a bun.

At least I can still have meat. I went to Applebees awhile ago and got a take two of Prime Sirloin and their Ribs. Delicious!

Sorry, I'm bursting a bubble here again. NOTHING in Applebees is gluten-free. There was just a big thread about how unfriendly they are. CC is rampant and their meats come pre-marinated.

[tarnalberry]

for a burger:

1) you can use lettuce to wrap it up instead of a bun

2) you can use two slices of gluten-free bread, toasted

3) you can get kinnikinnik buns

the first six months are the hardest. you're giving up all your favorite foods and it seems totally unfair, like the worlds just sticking it to you. sometimes, you just want to throw your hands up, scream "WTF?!", and go eat a burger (or whatever). but hang in there. you will get past the learning curve, you will find the replacement foods you need to make you happy, and you will find a new way of eating that pleases your taste buds, if you look for it. you have to learn something new that most people take for granted. but you will learn it, and it'll become easier. but right now it's really really hard and seems really unfair and stupid.

[Mango04]

See, I wonder though, how long do you think I'd live to if I was never diagnosed with this (I'm 19 currently)? I ate glutten on a regluar basis till only a week ago, and let's face it: America is Glutten-Central. Other countries use rice and stuff, but we choose wheat. We could very easily use rice, but because we're so used to wheat, and because of the extra cost for places like McDonald's to make a non-wheat bun, it'll likely never happen until enough demand comes. And that isn't likely since this is rare.

I know I have to keep to the diet, and unlike other diets, I actually can hurt myself if I don't do it (whereas a normal diet you can quit without fear of hurting yourself, unless you just keep gaining weight). But right now, it's INSANELY hard. I Just went to the student center, and I can have virtually nothing. I could have a handful of items, but it's not worth wasting my credit on. So I'm trying to figure out where and what the hours are of a local thai restuarant are (my parents went there and brought me back some AMAZING pod thai that was all rice based).

It gets easier! I promise! I am gluten-free, dairy-free and soy-free. By that, I mean I do not go near food that has even trace amounts of any of those things. However, I eat TONS of food. It takes a while to learn what is and isn't safe. You need to spend some more time preparing your own food. It is doable and even though it seems INSANELY hard right now, you will learn how to cope and how to safely eat lots and lots of food. Your school is required to provide you with more than a handful of options. Maybe you can move into a place with a kitchen?

There are so many people who don't get diagnosed until later in life, when all of the compliactions have already occured. Many of these people lose their ability to lead normal lives because by then they are so sick. You're lucky you got diagnosed at 19. Don't give up yet.

[taz sharratt]

for a burger:

1) you can use lettuce to wrap it up instead of a bun

2) you can use two slices of gluten-free bread, toasted

3) you can get kinnikinnik buns

the first six months are the hardest. you're giving up all your favorite foods and it seems totally unfair, like the worlds just sticking it to you. sometimes, you just want to throw your hands up, scream "WTF?!", and go eat a burger (or whatever). but hang in there. you will get past the learning curve, you will find the replacement foods you need to make you happy, and you will find a new way of eating that pleases your taste buds, if you look for it. you have to learn something new that most people take for granted. but you will learn it, and it'll become easier. but right now it's really really hard and seems really unfair and stupid.

i saw an ad the other day about gluten-free tortillas wraps so you culd have that with your burger or have a gluten-free sausage sarny, YUMMY

[Agent Z]

Sorry, I'm bursting a bubble here again. NOTHING in Applebees is gluten-free. There was just a big thread about how unfriendly they are. CC is rampant and their meats come pre-marinated.

Are you kidding me?!

That SUCKS! Nothing at all?! How is that possible?!

[ravenwoodglass]

"Is it true that some Celiacs have to be more strict than others? I've heard that some can't eat food that has touched wheat"

No it is not. All celiacs need to avoid all gluten in everything, period.

"So I went to McDonald's with someone and ended up eatin Chicken Nuggets, fries and an Oreo McFlurrey. Nothing really happened after. So perhaps, once in a great while? I don't plan to eat anything with gluten for the rest of the week because of that, but I find it difficult to COMPLETELy avoid it."

Gluten intolerance is a delayed reaction. The reaction can take anywhere from hours to days. For example My husband and I went to a restaurant last Friday. We both got cross contamination. He had gas the next day with skin sores and had D on Sunday. I had a migraine and ataxia Saturday, Sunday got the gas pains and joint pain and didn't get the D until yesterday.

[ravenwoodglass]

Are you kidding me?!

That SUCKS! Nothing at all?! How is that possible?!

Yea it does. In places that serve gluten food there is a real issue with crosscontamination. Even a crumb can make us sick. Using the same pan for our food can make us sick. Using the same grill to cook your burger and someones grilled cheese will make us sick. Until this country becomes more gluten aware, that means getting more of us diagnosed it does suck to try and take our chances at a restaurant. There are some that may do okay so be sure to check out the restaurant threads.

[Agent Z]

"Is it true that some Celiacs have to be more strict than others? I've heard that some can't eat food that has touched wheat"

No it is not. All celiacs need to avoid all gluten in everything, period.

"So I went to McDonald's with someone and ended up eatin Chicken Nuggets, fries and an Oreo McFlurrey. Nothing really happened after. So perhaps, once in a great while? I don't plan to eat anything with gluten for the rest of the week because of that, but I find it difficult to COMPLETELy avoid it."

Gluten intolerance is a delayed reaction. The reaction can take anywhere from hours to days. For example My husband and I went to a restaurant last Friday. We both got cross contamination. He had gas the next day with skin sores and had D on Sunday. I had a migraine and ataxia Saturday, Sunday got the gas pains and joint pain and didn't get the D until yesterday.

See, I don't seem to get any reactions like those except D (which I guess stands for, and forgive me for spelling it out probably wrong...diharrea). Maybe a little gas here and there, but mostly the wicked runs. No headaches or sores or anything like that that I notice.

How long do most celiacs seem to have had this disease? Do you guys think I and others get this when we're born, or sometime later in life?

(PS, sorry this thread seems to be going off topic, but.... )

[utdan]

See, I don't seem to get any reactions like those except D (which I guess stands for, and forgive me for spelling it out probably wrong...diharrea). Maybe a little gas here and there, but mostly the wicked runs. No headaches or sores or anything like that that I notice.

How long do most celiacs seem to have had this disease? Do you guys think I and others get this when we're born, or sometime later in life?

(PS, sorry this thread seems to be going off topic, but.... )

We're in the same boat. I'm currently a college student (although 30), just Dx myself 2 years ago and was having the exact same conversations with myself as what you put in this thread. I also experienced minimal bad effects most of the time immediately following a meal. But since I didn't find out until 28 yrs old I had suffered sore knees, worthless gym workouts, irritability, depression, etc. That stuff just creeped up on me around 23. What did it take for me to get convinced of my condition? I ate COMPLETELY gluten-free for 4 months straight and THEN had gluten. Thats when the gluten felt like digesting barbed wire. What I was told was that the longer you stay away from gluten the more sensitive you get to it....Actually I think someone said it takes months and months to heal completely by eating gluten-free (damage you never knew you had) and then when you gluten yourself again all that healing is undone quickly. Some people go into anaphylactic shock after staying gluten free for a long time and then eating gluten. Also I heard that this test is the only way many celiacs find out they are celiac.

"...the first six months are the hardest..."

Ditto that. Especially when you live in an area that doesn't have a health food store that carries a lot of the good gluten-free stuff. I had to internet order all my stuff and it got real expensive. Of course, I was cooking some type of meat or protein everyday, along with eating lots of veggies. But you do learn eventually to somehow pack a lunch instead of eating at the regular student places, or just go home for lunch and dinner everyday. It definitely does get easier. Your cravings for that McDonald's junk and other stuff diminishes and you learn how good life can be eating healthy.

Dan